A Blog Entry From 2009 That Asks The SAME Questions As We Do In 2019!

Sent in to me off forum … most of the " Better " threads tend to originate this way … I’ll top and tail it
when more info comes in … REMEMBER , THIS WAS FROM 10 YEARS AGO.



From The Cradle to The Grave : The Reality for Carers.

Caring for someone at home long-term, from the cradle to the grave, needs to be seriously looked into in respect of the main carer, who is usually, not always the mother. The impact of a long term caring role on the main carer in terms of being able to plan for the future, has never been acknowledged by government.

Consider a mother caring for her disabled child from birth right through to adulthood. Those carers who ‘choose’ to do this (according to the government) receive no proper recognition from government or society. People in this position ‘CARE’ until the day they die, or are no longer able to care because of ill health themselves (often a result of a lifetime of caring for another human being who is unable to look after his/herself)

For this lifetime of commitment carers receive compensation, not a salary, from the government, who in the past have called us ‘unsung heroes’. This term is extremely patronising and ignorant of the importance of a commitment to look after the life, health and safety and well being of some one who cannot do so for themselves. Use of this term tells us that the government has no idea of the energy carers must find every day to cope and strive for a normal existence in a lifetime of uncertainty.

The compensation of £53.10 carers receive weekly is a sad reflection of the value past and present governments have put on this special commitment to another human being. For this compensation, most carers work 24/7/365 - much longer than any politician, doctor, social care worker or in fact any other job on the planet. There are no trade union rules for us.

When we reach retirement age after a lifetime of care, we get a state pension and nothing else. There are no long-service awards for us. The £53.10 compensation is stopped, even though many of us are still carers at retirement age, and what happens at retirement age? We are told no more carers allowance! As our pension is called a benefit, it is ok for Joe Bloggs to have a job and still get a pension, but ours! is called a benefit.

We ask for the same rights as those in the world of work. The compensation we receive is insulting and humiliating, and leaves us feeling worthless. We want to take responsibility for our own future - not rely on handouts. We deserve better!

When I tried to put this case forward at a carers meeting, I was told that although what I was doing was working, I was not working for the government. However: if anyone other than the main carer does this job, it is called work, and is paid for with a salary and other benefits such as holiday pay, sick pay and pensions.

We have no rights - we have to fight for everything including respite. This cannot be justified.

At the moment, caring is only work when it is done by someone other than a family member. This case of double standards has to change if we truly wish to move on to an “Equal” society.

Some men and women give up a job that pays the mortgage in order to become carers later in life. How do they fare? Little better than the rest of us - because if they have managed to save for their old age, they get nothing, and their fight with all the endless forms begins.

When we are born we don’t have an inbuilt knowledge of how to be a nurse carer -but all of a sudden we are expected to know all about it. No-one teaches us. Whereas a District nurse or an agency worker must not use a hoist unless they have a second person with them, we are expected to damage our backs, arms and legs - and cannot afford insurance.

Even worse is the plight of child carers, who have little or no life at all. They have no pocket money, they miss School, and are often in trouble for being late. There are children as young as 6 years old helping to care for someone. Some eventually become the sole carer, as quite often a partner gets stressed and leaves altogether. Children should not have to be carers.

Surely in this day and age, carers should have real “Equal Opportunities”. We should not have to campaign and fight to keep open day centres where we felt our carees were in a warm, comfortable, safe environment, doing something worthwhile. The day centres were the best thing that happened for some disabled people and carers. And now they are being closed, carees are stressed and carers are even more stressed. Often both are being treated for depression.

A year ago in March a sheltered workshop employing 85 disabled people and 12 staff was closed down and left most of them with nothing. Where did that leave the elderly carers as most of the employees were there for over 25 years. This workplace was like a small community for working and socialising. Its workers were together for years and now their future is unknown. Carers fought for years for these amenities and now they are all closing, gone are the days when neighbours used to pop in and ask if they can help, even close family don’t help much in some families, leaving it to usually to one carer and just call or call in occasionally, especially if it is mental health or learning difficulty person being cared for.

We should not have to make numerous phone calls and be kept waiting, sometimes for over an hour. We should not have to have social workers so bogged down with paperwork that they have no time for clients and their wellbeing. We should have the old style welfare visitor coming to see us. We need a Union to do our legwork for us, especially when we have legal issues, as most of us do not have the time or energy to do battle - and battle we have to, or we are walked all over. We need free fares for carers, especially those that do not live with their caree.

We need more of an understanding with employers, as it seems that fewer and fewer carers are being employed, and many of them have had their time cut because of their caring role.

Many times in the past, carers have asked for respite and have been turned down. It is a well known fact that some carers have killed their caree, and themselves through lack of care from society, because there was a lack of help and understanding, and it was all too much for them.

Our jobs are often difficult because we care 24/7/365. Very few of us get the breaks that are recommended in the carers legislation. In fact, we get hardly any of the recommendations that are in the legislation. Carers might not make fame or news, but we are here, and we are going to make a lot of noise - PLEASE be SURE of that.

However we need the help of other voices out there who are not carers. Together, maybe we can make our voices loud enough to be heard. Please take notice, and help us get these issues put right.

Contrary to what some professionals think, we did not choose to be carers - our hearts and consciences and love would not allow us to do otherwise.

Remember: sometime in your life, you may have to make this decision too.

My daughter Susan was supposed to start having help on the day she died, we fought long and hard for it and it was too late. Carers are in crisis now.

Everyone should be aware of carers and becoming a carer.

I don’t mean a carer that works in an agency or a paid care worker.


The compensation of > £53.10 > carers receive weekly >

£ 66.15 in 2019 … a rise of £ 13.05 in 10 years … 1.98 % per year .

( Price of goods index … £ 53.10 in 2009 … £ 69.97 in 2018 … north of £ 70.00 in 2019 ? )
The REAL question to ask is …WHY are we continuing to having to ask the same questions ?

A clue ? … £ 140 BILLION and rising … and the Government don’t have to lift a finger to stop that saving rising !!!

Supporting organisations ? Still around … and continuing to bleat … albeit more softly than a decade ago.

It is so sad. 4, or was it 5 years ago now?, I felt I had no choice but to give up work due to trying to support 2 disabled children. Then last year, having struggled financially so badly that it pushed me to the edge, I chose to go back to work. On the positive side, it did help ease the money worries, and it has been nice to not have the stress of worrying about where the money for the next bill was coming from, but it has been incredibly difficult. I am now signed off work because of the stress of trying to manage 3 carees - 2 now adults, and the 3rd a child who developed a condition last September (Sod’s Law).
I now feel stuck in this terrible Catch 22 situation; my carees are much better off having me around 24/7 to advocate for them and support them with their various appointments/paperwork/daily challenges, but in doing so I completely screw myself over. So I am left with the choice that no parent wants - do I put myself or my children first? Such an awful situation to be in.


do I put myself or my children first? Such an awful situation to be in.

( Also … replace CHILDREN … with PARENTS … or FELLOW SIBLING(S) ( Kinship angle ) … ? )

The VERY card that trumps all others when looking at ourselves as carers … inside a defective society … made worse
by current Government policies.

That question again … " If I don’t care for X … and can’t afford to replace myself … who else will ? "

Poor Law 1601 thread … then , the poorhouse for the " Impotent poor " … 2019 equivalent ?


( And , for once , not Worksop ! )